I am Vicky, and this is My Functional Biliary Disorder Story

I was just 25 years old. I had given birth to my daughter only a few months earlier when I started experiencing constant pain. I was repeatedly treated for UTIs and IBS, but nobody seemed to know what was really happening.

Then one morning, I woke up with yellow skin and yellow eyes. I was absolutely terrified. Blood tests and scans showed that I had gallstones, and I was scheduled for an emergency ERCP to remove the stone. I had a deep-seated feeling that something wasn’t going to go right. Looking back, I wish I had trusted that instinct.

The procedure should have been a day case, but the stone was larger than expected, and I suffered a bleed. They believed the bleeding had stopped, but decided to keep me in hospital overnight. Unfortunately, in the early hours of the morning, I began to haemorrhage. To cut a very long story short, I lost a huge amount of blood and ended up undergoing eight hours of open surgery, leaving me with 32 staples, followed by two weeks in intensive care.

I spent six months in hospital. During that time, I developed a severe infection, then pancreatitis, followed by a pancreatic cyst. Eventually, I was discharged home – but this was only the beginning of my journey. Five years of being told nothing was wrong. For the next five years, I was repeatedly told:

“You’re fine. It’s just IBS.”

“It’s in your head.”

“Take antidepressants.”

Yet I continued experiencing what felt like severe gallbladder attacks – despite no longer having a gallbladder. My blood results were repeatedly abnormal and showed signs consistent with pancreatitis, but somehow this was considered “normal” for me. I couldn’t accept that. I knew something wasn’t right.

So I started researching for myself. I obtained copies of my medical records, changed GP surgeries and even contacted a professor in Liverpool. Then my new GP said something that changed everything: “Please consider seeing a new consultant. I’ve heard he’s very good, and I’ve referred a few complex patients to him because there’s definitely more going on.”

Finally, someone listened.

Finally, someone believed me

I was incredibly nervous about seeing the new consultant, especially after everything I had been through. But from the moment I met him, I felt at ease. He listened. He sympathised. Most importantly, he believed that there was more going on. He told me he thought I had Sphincter of Oddi Disorder – now generally referred to within the broader group of Functional Biliary Disorders – as well as pancreatic insufficiency and episodes of pancreatitis.

Given my previous experience, I had to build trust before I could even consider another ERCP. But I needed answers. Eventually, I agreed to undergo the ERCP so that we could investigate what was happening and try Botox treatment. And that treatment gave me my life back. I was also tested for bile acid malabsorption and started Creon to support pancreatic digestion and Cholestagel for bile acid diarrhoea.

The fight didn’t end there. Over the years, I’ve been left facing multiple abdominal surgeries because of complications from my original surgery, and I still require further surgery now. Honestly, it’s exhausting having to fight all the time. Right now, I’m not having an easy time. I’m dealing with daily pain, hives, facial flushing, bile acid malabsorption, pancreatitis flare- ups, bloating, sickness and diarrhoea, alongside multiple medications that can sometimes create their own problems. And because my Botox treatment has been stopped, things have become incredibly difficult.

I can’t pretend otherwise. Regular Botox treatment gives me a life. When it works, it significantly helps the daily pain, bloating, sickness, rashes, and bile acid diarrhoea. Without it, even simple everyday tasks can take an enormous amount of energy. It’s becoming harder to keep working. It’s harder to manage normal daily life. But I’m still here. And I’m determined not to lose myself again.

I am incredibly lucky to have a consultant who continues to support me and understands how much this condition affects my life.

Twenty years ago, while lying in that hospital bed, I made a decision. I decided that if I ever got through this, I wanted to help others going through similar experiences. I went on to study for a degree from home and have spent years educating myself about different conditions and learning everything I can about my own health. Now I want to use what I’ve learned to help others. Because everyone deserves to be heard. Everyone deserves to have their symptoms taken seriously. Everyone deserves to be believed. And nobody should have to spend years wondering whether it’s “all in their head.”

One thing that gives me comfort through all of this is the amazing people I’ve met because of this condition. People who understand without needing an explanation. People I can turn to on the really difficult days. That community means more to me than I can put into words. This condition may have changed my life, but it hasn’t taken away who I am.

I’m still fighting. I’m still learning. I’m still working. I’m still trying to help others. And most importantly…

I’m still me.

Functional Biliary Disorder is real. Our symptoms are real. Our stories matter. And we deserve to be heard.